ARE WE FACING AN AUTISM EPIDEMIC?

Melanie Phillips

Last updated at 00:00 13 March 2003

FOR three months, Mail writer Melanie Phillips has been investigating the MMR controversy. Here, in the last of three major articles, she examines claims that the vaccine has triggered an epidemic of autism in our children - and how the evidence is piling up that official complacency is sorely misplaced.

ACCORDING to the medical establishment, the whole idea is a nonsense. The suggestion that a new autistic bowel disease is now affecting large numbers of children who were previously normal until they were vaccinated with MMR is simply not borne out by the evidence.

There is, say these experts, nothing new going on. All that's happened is that a few parents are desperate to invent a reason for the appalling disorder of autism that has afflicted their children.

Autism often isn't noticed until the second year of life, which happens to be the time children are vaccinated with MMR. The parents, so the experts insist, have put two and two together and made five.

So it came as a bit of a shock to attend the annual meeting of the Autism Society of America in Indianapolis last June.

There I discovered upwards of 1,000 parents, most of whom told the same story: that their children were developing totally normally until they had MMR, following which their skills and personalities disintegrated and they developed appalling gut problems and food intolerances.

Take Jeff Sell, a Texas lawyer with eight-year-old twins, Ben and Joe.

Ben was born with an autistic disorder but Joe passed all the normal milestones until he had MMR.

'Joe had an immediate reaction with epileptic seizures, very high fever, rash and vomiting the next day,' said Sell. 'We took him to the doctor and were given the standard party line. In a few months after that the language he had developed had all gone, and chronic diarrhoea set in.' Or take Liz Birt from Chicago. Her eight-year-old son Matthew passed all his developmental milestones until he had MMR and Hib (haemophilus influenza type B) vaccinations at 15 months.

'That night he had a high temperature.

Seven days later he started to have severe diarrhoea and stopped sleeping at night. He would wake at 1am and be up for the rest of the night. And he started screaming.

'I was very concerned because he wasn't growing and putting on weight. A few months later he started staring at lights, not making eye contact.

'Previously, he could count to ten, say mama and dada and ball but all these words went away. Then it seemed he wasn't hearing what we were saying at all.' Despite the fact that Matthew had chronic diarrhoea, doctors dismissed his mother's concerns. But then she took him to be examined by Andrew Wakefield's team at the Royal Free Hospital, London.

Wakefield is the British doctor who first raised the alarm about MMR, linking it to autism and bowel problems.

His team discovered that Matthew was in constant pain from a grossly impacted and diseased bowel something he believes is directly linked to autism following MMR jabs.

Other parents tell similar stories.

Tanya Reubarger from Indianapolis said of her five-year-old son Nathan: 'He was a perfectly normal baby until he had his injection.

'Then he started regressing, throwing violent tantrums, beating his head on the walls, beating his hands until they bled, frantic, always crying.

He was eating normally but he had constant diarrhoea. Yet no one will believe you.' In Britain, the National Autistic Society says it has not noticed more reports of regressive autism and bowel disease following MMR.

But other groups say this is because parents with such experiences don't join the deeply conservative NAS because it gives them no support.

Such parents say that through their children's disorder, they have met countless other couples whose autistic children similarly developed normally until MMR provoked a catastrophic regression.

And they say the claim by autism experts that they simply failed to spot autistic symptoms before the vaccination is demonstrably untrue, since so many of them have video recordings of their babies before vaccination showing them to have been perfectly normal. TRACEY STEELL from Glasgow has triplet boys, now aged eight. They had finished a course of antibiotics shortly before their MMR vaccination.

Until then, they had been perfectly normal babies.

Within a few days of the jab, one by one all three developed high fever, started to scream uncontrollably and then stopped developing.

'They didn't play, they just lay there, all three of them,' she said.

'They stopped playing with the dog and the cat, they didn't play with their toys, they didn't cry; if you picked them up they would just stare at you.' Because they were triplets, she said, the babies were continuously monitored by the hospital for the whole of their first year of life - and the hospital found nothing abnormal about them, giving the lie to the claim that such parents fail to recognise autistic symptoms present before vaccination.

Jonathan Harris of Birmingham has six children. The two eldest, Ashley, 16 and Laura, 14, were too old to have MMR, and are normal children. The next two, Thomas, 12, and Oliver, eight, did have MMR.

Within a week of the jab, Oliver started to scream and his behaviour regressed: he wouldn't make eye contact, wouldn't play and started throwing things around. Thomas developed bowel problems and lost his language skills.

Harris is now looking for single vaccines for his two youngest, who are four and almost three. 'Most parents of autistic children that I have met have had similar experiences to us,' he said. 'I know dozens of such families.' What no one disputes is that in both Britain and America there has been a huge rise in the numbers diagnosed with either autism or autism spectrum disorder (ASD), which covers other developmental abnormalities.

And what is striking is that this rise coincided with MMR vaccination being made a legal requirement in the U.S. in 1979 and being introduced into the UK in 1989 (although some experts claim - with figures that have been contested - that autism started to rise in the UK two years before MMR was introduced).

The main U.S. figures are collated in California, the state with the most advanced services and reporting system for developmental disorders.

Rick Rollens is a former secretary of the California state senate whose own son developed regressive autism after his booster MMR shot.

'Something happened in 1979-80,' he says. 'The pattern changed.' And the rise seems to be accelerating.

Between 1987 and 1998, the proportion of autistic people using California's services almost doubled.

Between 1987 and 1998, there was a rise of 273 per cent in the number of autistic cases in the state.

According to Rollens, California is now adding on average seven new autistic cases per day to its register.

The figures are borne out by studies of other parts of the U.S. They correspond to UK figures too.

Until recently, the rate of ASD in Britain was estimated at between 5 and 20 per 10,000. The Medical Research Council now puts it at about 70 per 10,000, or one in 166.

The National Autistic Society thinks that is an underestimate. In a study, it found the rate running at one in 86 in primary schools, a staggeringly high figure.

Teachers are increasingly reporting that they are finding it difficult to cope with the new phenomenon of autistic children in their classes.

Nevertheless, the medical establishment has long maintained that the numbers aren't really increasing. DR ERIC FOMBONNE, the child psychiatrist and renowned autism expert who is advising the drug companies that make MMR, has pooh-poohed the California figures and said the high autism rates merely reflect wider and better diagnosis and recognition.

He has been backed up by Dr Patrick Bolton, a child psychiatrist and co-director of the Autism Research Centre at Cambridge University, who says the explanation for the rise is unclear.

'It's most likely to be at least in part due to the fact that we've changed our way of defining and diagnosing autism and we are better at spotting it. We've broadened the concept.' However, last autumn a study by the University of California concluded that the huge rise in autism was real and could not be explained away by changes in diagnostic practice or classification. And even Dr Fombonne now appears to be conceding that a significant change is taking place. In a recent article, he wrote that rates for the range of autism disorders were now three to four times higher than they were 30 years ago.

The parents respond with fury and incredulity to the idea that such behaviour could simply have been overlooked in the past or mistaken for something else.

In the U.S., Jeff Sell's wife was a special needs teacher in Spring, Houston. 'In 1994, she knew there were three children with autism in our district,' he said. 'Now there are 83.

'Are we being told that there were previously 83 children, all screaming and rocking and head-banging, and nobody noticed them? You don't miss autism.

There are just more of them.' Judith Barnard of the NAS agrees: 'We have heard from parents that huge numbers of autistic children are being identified, and it wasn't like that when they were kids.

'So we asked schools whether they felt there were more autistic children now than five years ago and two-thirds of them said yes. There is a sense that something perceptibly different is happening.' Yet the establishment points to an apparent paradox which they say undermines the claim of a link with MMR. How can this be cause and effect, they say, when the rate of autism is still rising even though MMR uptake has stayed steady (or even gone down)?

The response from the Wakefield camp is that MMR is not the only cause of autism. Many other factors may be involved, such as, for example, the dramatically rising rate of food and other allergies, or the increasing burden of other vaccines administered to infants.

In the U.S., many parents believe that the mercury found in some vaccines other than MMR, such as the diphtheria/polio/tetanus jab, may weaken a child's immune system so that MMR becomes the final knockout blow.

Dr Jeff Bradstreet runs a clinic for autistic children in Florida. He firmly believes that MMR is a devastating factor in a wider process that impairs children's immune systems.

His own son Matthew was a normal baby until his MMR jab. 'Within two weeks of receiving MMR, Hib and chickenpox, Matthew was lost,' he said. 'He had chronic diarrhoea and regressed into a world of his own. After his booster MMR jab he had seizures.' Tests revealed he had a very high level of measles virus in his spinal fluid. 'A Congressional researcher and I called paediatricians all over the country and presented the lab data and the history and asked them for their diagnosis and they all said measles and encephalopathy (brain disease).

'We said he had autistic features and they said the encephalopathy was causing the autistic features.

'There are many toxins in the environment.

Ultimately, I think you have a series of wounding events and then in a weak state the child is exposed to MMR.' The theory that too many vaccines at once overload the immature immune system is - like everything else in this story - controversial.

The eminent immunologist Sir Peter Lachmann says: 'There's no limit to what the immune system can take; that's what it is for. There is no evidence that three living viruses administered at the same time overloads it. I think this idea is entirely drawn out of the air.' But Professor James Oleske, a paediatric immunologist in New Jersey, says: 'It's not the number of antigens in a vaccine that's the problem - it's the fact that in preparing them for the vaccine, other things are added to make them more effective.' Wakefield believes it is particular

folly to mix viruses in a vaccine since this makes them unpredictable in their effects - a view Lachmann dismisses.

The Department of Health argues that the triple MMR vaccine is safer for children than single jabs, which would expose them and others to a far greater risk of measles, mumps and rubella through slow or nonexistent take-up.

Because of the controversy, however, MMR take-up is down by about 10 per cent to 84 per cent, and demand for single jabs has soared.

Drug manufacturers are now limiting the availability of single vaccines, with claims by campaigners that the Health Department is leaning on the companies not to supply them.

The perils of making it difficult for GPs to give single jabs on the NHS were underlined last month when two private clinics were shut down after it was found that their single vaccines were either ineffective or contaminated.

Dr Richard Halvorsen is a London GP and one of the few who gives single vaccine jabs on the NHS. 'The arguments against providing single vaccines are irrelevant if parents won't give their children MMR,' he said.

'It seemed an overwhelming clinical argument to offer the single vaccine.

By not offering it, we were contributing to the potential epidemic of measles that the department is purportedly trying to prevent.' To which the Health Department replies: look at Japan. In 1993, Japan abandoned MMR completely after it suffered an outbreak of aseptic meningitis triggered by the Urabe strain of mumps vaccine within the triple jab.

Urabe-strain MMR had been withdrawn in Britain the previous year for the same reasons (shamefully, the Health Department had known of the dangers when it was introduced) and replaced with an updated version. JAPAN, by contrast, switched entirely to single jabs. This has resulted, says the Health Department, in a measles epidemic in Japan and 79 deaths from the disease between 1992 and 1997.

On the face of it, then, this seems a strong argument for sticking with MMR. But Dr Hiroki Nakatani, director of the Infectious Disease Division at Japan's Ministry of Health and Welfare, has a very different story to tell.

He says that in 1989, when Japan first introduced MMR, there were 34 deaths from measles; in 1990, there were 53 deaths; in 1991, 39; and in 1992, 14.

Then, in 1993, the Japanese government moved from recommending MMR to single vaccines instead.

The number of deaths from measles per year has since remained at between 14 and 25.

So in fact, in the years Japan was using MMR there were on average rather more deaths from measles quite apart from any deaths and serious damage done by the vaccine - than since single jabs were introduced.

This may well have been because take-up of vaccines during the MMR years never reached more than 68 per cent. By contrast, said Dr Nakatani, take-up of the single measles vaccine has now reached 95 per cent, utterly disproving the British Government warnings that the single jab would cause a steep decline in use.

In other words, it may be possible to increase take-up of single jabs above the rate of MMR simply through a sustained campaign of public education and encouragement.

So how is this great controversy to be resolved? Next year, about 1,000 families will be pressing claims for compensation against the drug companies in the High Court.

Whatever the result, this is not likely to end the argument. The answers to this riddle will have to come from scientific evidence, and are most likely to be uncovered in the U.S. where much research is going on.

What, though, should a baffled public and - in particular anxious parents make of the evidence so far? Which of these warring sides is right? BOTH sides are fundamentally motivated by the highest concerns. Unfortunately, these concerns collide. The Department of Health and the medical establishment want to protect children and the wider community from diseases that can kill or cause serious handicap.

The Wakefield camp and the parents are not against vaccination indeed, most of them agree on its importance - but say the evidence is stacking up that MMR carries too great a risk of injury.

The Wakefield camp has not yet proved its case. Its studies need to be replicated.

On the other side, Wakefield's opponents have not proved their case either. The epidemiology is flawed, and the claims made for it by the Government have often been bogus and misleading.

Moreover, the Department of Health is ill-placed to allay anxiety when - as I revealed in the first part of this series - it was responsible for introducing a strain of MMR whose safety it knew had been seriously questioned, only withdrawing it after three years of flawed surveillance and resulting damage to a number of children.

As we have seen today, fears over this same Urabe strain prompted Japan to ditch MMR completely.

The Health Department chose to stay on the triple-jab route, but its handling of the debacle was deeply unimpressive.

Given this dubious record, and the testimony of so many parents, it would seem only prudent both to permit single jabs and to encourage as a matter of the utmost urgency properly independent research to prove one way or another whether Andrew Wakefield is right.

Although his case is still inconclusive, there is surely enough evidence to prompt serious concern - and a precautionary approach. The vast majority of children are clearly unaffected by the MMR jab; but if a small proportion is indeed affected, that still amounts to a lot of children.

The Government is frightened to do anything that may prompt a widespread collapse of confidence in vaccination.

But if it persists in dismissing the accumulating evidence from both clinicians and parents, it may find that it causes the very collapse in confidence - with disastrous results - that it is so desperate to prevent.